2.29.2012

A Wonderful Busy Normal Life

I love to report that we've been too busy for me to sit down and post.  We've been busy outside, we been busy attending birthday parties, we've been busy with our everyday life.  And I literally am thankful for every moment of our crazy days.
Monday we were in Dallas for labs, Xray, etc.  We received a great report.  There were no major changes in her lab work so we stay the course.  A lot of people ask me about her medication doses.  That is one of the most common questions I get.  Ry is still on 28 doses of meds a day.  This is down by about 3 since we first transplanted.  She takes meds 6 times a day and there are 17 different medications.  She takes them wonderfully, I'm always proud of her!

Here's her daily med box.

We've been able to get out and about a little more lately as it seems most of our family and close friends have been healthy lately.  I want to say to all of those who we've run in to in the grocery store or at a party or restaurant, thanks for always respecting our space.  And to our friends who have let us know if they were a little under the weather so that we did not risk any exposure.  It's nice that folks remember and respect that Ry can't hug and kiss all over you, or that touching her isn't exactly ideal.  I immediately recognized and appreciate those who care enough to think about her health.  It has enabled us to venture out and to allow Ry to get out without her mask.  We of course never get far without another squirt of hand sanitizer!  Ry knows the drill and obliges. 
So here are some of the fun things we've been up to.  We were thrilled to be able to attend birthday parties for Ry's cousins.  Four of her five cousins have birthday's within 3 weeks of each other.  So we managed two parties in one weekend for all of them.  It was AWESOME to see Ry have so much fun with them.  She loves her cousins so much.  They are her best friends.
Here she is headed home on Sunday after an exhausting weekend of celebrations.  She's really tired, but just never lets up.  I foresee curfew problems with this one in the future...


After a busy weekend of socializing, we spent this past weekend on a much slower pace.  Gilly left for South Texas on Saturday afternoon, so Ry and I had a girls day.  We worked all day in the flowerbeds!  She helped me every bit of the way.  Her new most favorite past time outside is to water something, anything!  She watered a few flowers, filled her "water tank" and washed rocks!  Luckily it was a beautiful day so it didn't matter that she got a bit wet.  We still have lots to catch up on outside, but Gilly and I have a great helper, so I know we'll get it done. 
After a day of hard work, Ry and I washed up, put on our PJs, ate pizza and watched the Lion King.  I got out our slumber party blanket and some pillows, but Ry's idea of a slumber party looks more like this...

That's my girl!
 A (princess) lawnchair and a
 cold beverage in the drink holder.
Life's been good.  We really are so incredibly blessed.  We are so thankful for our happy girl.

10 comments:

charity said...

she is so cute and im glad shes doing really good

Anonymous said...

That's so neat!!!

Nanette

Sara Bading said...

love it. Did I catch her singing the words to that song? We sing that frequently at our house too. Anytime Gilly needs a place to crash in South Texas tell him our door is always open. And if you gals are in Corpus for work anytime let us know. So glad she's doing well. Is one of those meds a 3 a.m. dose? I am impressed she wakes up for that!

Karen said...

So blessed by your wonderful update. These simple everyday moments are so special - thanks for reminding all of us to cherish those special moments with our own children.

So happy to hear she is just doing SOOOOOO great and is such a Happy, happy little girl. We already know she has super happy parents. :)

Glad you are also able to get out and let her enjoy "life" in the real world, not so much of "life in a bubble". Grateful for your friends and family who are so understanding of the extra "space" little Ry needs to keep her good health.

Thanks for the wonderful report _ still Praising the Lord for His continued blessings for you, Ry and your family. :)

Mary Mac said...

I am crying happy tears for you precious family. Praise the Lord!

Unknown said...

First of all...Sooo happy for yall!!

Lovvvve the video!! She has changed SO much since she has been out of the hospital. Love her!

Maddie said...

AWESOME dance moves, Ry! So glad y'all are doing well. Hope we get to catch up soon!

Anonymous said...

What a wonderful report. There is nothing much else to say but God is good and there by your side. Every day is a blessing that can't be replaced. Our thoughts and prayers are still with you every day.
Aunt Dorothy

Anonymous said...

FYI to people in the DFW area, based on this interview, it appears Rylynn will be making a tv appearance at 6:30pm on channel 8.

http://www.wfaa.com/good-morning-texas/A-Sneak-Peek-at-Childrens-Med-Dallas-Season-2-141192503.html

ashley said...

Every time I drop in on the blog I click out of it with a HUGE smile. Nice to read such great posts.